Friday, February 17, 2012

Faith in God is the substance of things hoped for the evidence of things not seen - Trusting God for both Quanity and Quality of Life for Luke

Just wanted to say thank you for your prayers this past week. Luke seemed like he was getting sick on Valentines Day morning, but by afternoon his fever was gone, his heart rate was back to normal and his oxygen needs were beginning to get better. We did end up having a babysitter for the kids that night while we went out with our good friends, Juan and Yoli. I did realize a few very important things that I will try to remember if we have another babysitter anytime soon. For one thing I need to be sure to tell whoever it is that Luke will have times where his oxygen numbers will drop, don't panic what a minute to see if they go up on there own, if not then check his probe, if that's good and his numbers don't get better make sure his oxygen tank is not empty and then if all those things are ok and his numbers don't get better turn up his o2, if that doesn't work turn on the oxygen concentrator and put on his mask. Yep, I had to walk the babysitter through all those steps on the phone, just so thankful that she was willing to stay and work through them. Finding this babysitter was like finding a fine jewel, she is definitely worth her weight in gold, we are hoping she will say yes next time we need her!
Appointment update:
Surgery follow up went great, only took a few minutes for the surgeon to say that Luke's incision sites look great. We did find out that his gallbladder did have some pretty extensive damage, once again reaffirming the fact that we made the right decision to get it out.

Pulmonology appointment went ok, Dr. said that he sounded ok, though more course and junky then the last time we were there. After some discussion on ways to help Luke we decided that we would try to get a cough assist machine for Luke to help his coughs more productive. The Dr. did mention that at this point our main goal for Luke is for quality of life, not necessarily quanity, I'm pretty sure the Dr. doesn't even have a clue to how painful it is to hear those words. Because I want both quality and quanity, I realize that without a touch from Jesus that is exactly the reality of Luke's life. I'm so glad that I have faith in God and am able to put my hope in Him, for He truly is our only hope for Luke's life to get better.

Blood work showed that Luke's seizure medication is where it should be, his liver panel looked good and his other tests looked pretty good also. I'm still not sure if I want to keep Luke on this medication as I'm not seeing any changes in his seizure activity and I'm pretty sure it's causing Luke to be more congested at times, as this has been known as a side effect in many kids.

Luke's Orthopedic appointment was the best appointment of the week. I'm ashamed to say that I was dreading this appointment more than all the other appointments he's had recently. His new ortho Dr. first asked why we were there, then examined Luke and then talked about the findings of his last CT scan. She told us that she's never seen a child like Luke before, his hips are still in socket though unlike so many children that are similar in his diagnosis they actually do come out of socket in the front, but they go back in again. All the other kids that she's seen similar to Luke have the problem of their hips dislocating in the back not the front. The other thing that makes Luke so unusual is the fact that his legs are extended to the point that it doesn't allow his knees to bend. We talked about his knees for quite awhile, I was so afraid that once again I would be told that nothing could be done for them, but no she said that if Luke still has rounded cartilage on the ends of his knee sockets she thinks that she can help get them to bend again. That was music to my ears. We are going to schedule a MRI for his knees and then a follow up with her to see what we find out, then go from there.

The only reason I was able to go into his ortho appointment with peace in my heart is because I truly gave the outcome of the appointment to God. I decided this morning that I would trust in the Lord with all my heart and lean not on my own understanding, in all my way acknowledge Him and trust that he would direct our path, Proverbs 3:5-6. Why am I amazed at the fact that God really does direct us when we allow Him too?? You would think I would know this by now.

Gordy and I are leaving tomorrow, hopefully by early afternoon for our much needed break. Please be praying for all to go fine while we are gone. The kids go to Juan and Yoli's Friday afternoon until Saturday afternoon. On Saturday Natalie will cover the night and Sunday daytime, then Amy will take over until we get home Monday night.

Last but not least please keep my dear friend Annie's daughter Izzy in your prayers Friday, she is scheduled to go in to have major back surgery tomorrow. She will be in surgery for about 10 hours and then be in the PICU for about a week and then another week in the hospital. Also pray for my good friend Lindsey's son Santana who had back surgery last month and had major complications this last week, they found MRSA deep inside the wound, after spending the last week in the hospital he's finally going home tomorrow, but he still has very long road of recovery ahead of him as he goes home with on IV antibiotics for at least 3 to 6 months.

Love in Christ,
Luke's Mommy Sue

Tuesday, February 14, 2012

A quick prayer request needed for Luke today

Luke woke up with a fever today, very congested, needing extra oxygen and a high heart rate:-) Would you please pray for a speedy recovery we actually have a babysitter coming tonight to watch him and the kids while we go out to celebrate with our good friends, Juan and Yoli's it's their 25th wedding anniversary. This is the first time we've actually had a babysitter in a really long time. So don't want to cancel our evening we've been planning this for a long time.
Would you please pray that he makes a speedy recovery, because as you know if you read my last post we are hoping to get away this weekend. Luke being sick is par for the course as previously mentioned it always seems to happen before we go somewhere:-(

I hope you have a Happy Valentine's Day, enjoy yourself and give someone an extra hug today!

Luke's Mommy Sue

Sunday, February 12, 2012

Proactive, that is what I'm going to be this week in asking you for your prayers

Proactive- Serving to prepare for, intervene in, or control an expected occurrence or situation, esp. a negative or difficult one; anticipatory.

That is exactly what this post is all about. You see Gordy and I are planning a getaway next weekend, because we are both desperate for some sleep, did I say desperate, yep that's what I meant. It seems like anytime we try to get away for a much needed break from the constant care of our precious Luker man he always and I mean always seems to get sick. Somehow he knows we are leaving even if we don't talk about it around him, I'm not sure why but it always happens.

Part of me feels just a tiny bit bad for being able to get away for the weekend, I know so many that are on this journey that are unable to ever get a break and I'm truly sorry for that, not sure how they go on. But then again the majority of the people that I know that have children similar to Luke's severe needs have nurses, they are able to get a breather from the constant care that they have to give, whether it's just a night nurse that takes over for them a few nights a week so they can get some uninterrupted sleep or a day nurse that gives them a break.

We are blessed in the fact that we do have some help in the mornings with my sister Cindy coming over 2 mornings a week and Natalie coming over 2 mornings also, them coming over is the only reason that I can go on some days, that few extra hours of sleep keeps me sane. We also have our precious daughter Amy still at home, she is a huge blessing to do all she does to make our journey easier.

Gordy and I will be celebrating our 29th wedding anniversary this summer:-) I've had people ask me many times how do you stay married that long?? We are blessed in the fact that we've always been able to keep our communication lines open through the really hard times and as you all know we've had some really hard, almost impossible days. I would be lying if I said that things have always been perfectly fine, nope we've definitely had our bad days and weeks, but we are committed to staying together. We made the decision on July 22, 1983 that we would stay together through the good times and bad times PERIOD. The only way we've found the last few years to stay strong as a couple is to get away from the constant stress that we live under, being sleep deprived on top of handling all Luke's medical needs, along with the needs of our other children and then adding on top of that Gordy has a pretty stressful demanding job makes some days seem very challenging to say the least.

Bottom line I am trying to be more proactive in my life today. Just as Gordy and I are being proactive in our marriage by being sure to keep it strong during a time that we could just curl up and give up, we have decided to keep our relationship strong by making it a priority this coming weekend. Therefore we are humbly requesting that you would please keep our marriage, our family and Luke's health in your prayers this week as we prepare to take a much needed break away. Thank you:-)

Also wanted to remind you that this week will be full of way too many appointments for Luke. Tomorrow I have to take Luke into to get his blood drawn to test his seizure medication levels in the morning, then he has his follow up appointment with the surgeon at 1 and last but not least his Pulmonologist appointment at 2:45. Prayers would be appreciated to get through our Monday.

Love in Christ, Luke's Mommy Sue

I love it when Luke and Lily get to sit down and watch a movie together. Lily enjoys reading books to Luke and even has him playing with her dolls at time, Luke seems to loves it!!

Thursday, February 09, 2012

Services, Seizures, Sunshine, Seizures Medications, Smiles & Seizure Frustrations

Last weekend I was honored to be asked to be a part of a panel of 3 people talking about trials and adversity in our lives and how with God's help we've been able to go on in our lives even though at times those hardships seem like they made our lives look almost hopeless. One of the men talked about how his trials were brought on by mistakes he had made in his life, taking drugs, drinking too much alcohol and eventually getting caught selling drugs which put him in the local jail for 53 days. He talked about how he began to read through the book of Proverbs in the Bible every day and how God helped him to gain wisdom during that time of severe pain and adversity in jail and how now God is using him to bring others to become Christians. The other gentleman talked about how he had to learn to trust God during the past 12 years when he literally lost everything financially in his life, how he had to learn to forgive others for not coming through with things they said they were going to do and how he had to learn to forgive himself for the mistakes he made that led to his financial destruction. Then I shared with the church about Luke's journey and how I have come to rely on Christ's strength alone, that there are some days that the only way I'm able to keep going is by quoting the scripture, I can do all things through Christ who gives me strength over and over again until I begin to believe it. It was not easy sharing the tragic story during each of those 5 services over the weekend, the ONLY way I was able to get through each service was knowing that it God who gives me the strength to go on.

Luke was scheduled for an EEG on Monday afternoon; I had almost cancelled that appointment thinking that we hadn't seen any seizure activity lately so why put him through another EEG just to hear the same report. You can imagine my surprise when the EEG tech said that she had called the neurologist in because Luke was showing quite a bit of seizure activity, therefore she would not unhook Luke from all the wires until the Dr. had an opportunity to come and see him. What should have only been an hour appointment lasted just about 4 hours, we left there with a new script for an increase in the current seizure medication he has been taking lately and with orders to have his blood taken next Monday to be sure his seizure medication is at a therapeutic level. I asked the Dr. what kind of side effects this medication has and was told that they were not anything worth worrying about. I left the clinic feeling like I had been punched in the gut, I was so surprised and saddened to hear that Luke is having new kind of seizures; it was a night of many tears.

Tuesday I woke up to an absolutely beautiful sunshiny day, we don't see many days like that in February. In fact it was so warm I was able to go on a walk/jog without a coat on that day. I remember singing along with the praise songs on my iphone while I was walking, just thanking the Lord for blessing me with such a gorgeous day.
I broke a new time record for the 4 miles I walked that day, it was a gift from God to be able to enjoy something as simple of enjoying that time with no stress bothering me.

Wednesday I woke up way later than I wanted to, poor Luke stayed in bed way later than normal that morning. I had a hard time getting anything accomplished, just felt worn out from the week already and it was only half way done. That day I wrote a post out on my fb to see if any of the mom's on a near drown site had any experience with seizure medication that Luke is currently using, hoping to hear a good report about this med he is on. Later that afternoon I spent about 3 hours in the kitchen cooking up a ten pound package of hamburger making enough taco and spaghetti meat for about 6 meals, including our meal of taco’s that evening.

Thursday morning I checked my fb to find many of the mom's posted that their kids had used Depakote (Valporic Acid) some with no bad side effects, other with very bad side effects, the worse being that one of them almost had serious liver problems because of that med. That once again sent me into a spin, I was very angry that Luke's neurologist didn't even mention that one of the possible problems with this medication can be very serious liver damage along with a long list of other problems. I went for a long walk, during which time I spent most of it crying out to God, asking him to help me not to be angry at this Dr., asking him to lift some of the burden I've been carrying lately with all of Luke's current medical needs, asking him to work a miracle today, asking him to help me to stay strong, because I was feeling so very weak, I'm sure that anyone that saw me walking and talking to myself probably thought I was a very needy lady. I took Luke to the Hyperbaric chamber in the afternoon, which I'm trying to do again knowing that HBOT helps with seizures and also will help to completely heal his surgery wounds, which by the way are looking really good.

During all this week I'm so very thankful that Luke seems to be his smiley self again, after losing that smile for so long it is such a great relief to once again be blessed with his sweet smile. He also seems to be doing pretty good, except for the fact that he has been extra "junky" lately.

PLEASE be praying that God will give me wisdom to know exactly what to do about this current seizure medication Luke is on, while I don't want him having seizures, I also don't want his liver to be destroyed by this medication. Also be praying as we have quite a few appointments coming up next week. Monday I have to take him in the morning to have his blood work done, and then we have his surgery follow up appointment at 1 pm and his respiratory follow up appointment at 2:45, a very full day of appointments. We also have an orthopedic appointment on Thursday, which is the appointment I'm trying so hard not to be anxious about, especially since we have to find a new Orthopedic Dr. since his last one moved away last month. I already know from the CT scan Luke had many months ago his hips are out of socket, I’m praying that this Dr. will not just tell us that Luke’s hips don’t really matter anymore since Luke does not and will not walk for the rest of his life, that is what I’m usually told by these Dr.’s. Have I said how hard these appointments can be?? Thank you for your continued prayers, they are what keep us going:-)

Love in Christ,

Luke’s Mommy Sue